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Why end of life care needs to improve, and what we need to do next.In the weeks surrounding the general election a number of important independent reports were published which together contained recommendations about why and how people’s experience and quality of care at the end of life needs to be improved.The purpose of this short report is to enable decision-makers at every level, including those responsible for commissioning and providing services and research, to understand the key findings of these reports as well as their recommendations about what is needed. It also includes some recommendations by The National Council for Palliative Care (NCPC).Published 15/07/2015
‘What to expect when someone important to you is dying’ aims to demystify the dying process so that people better understand the changes that can happen in the last days of life. Shaped by people who have experienced the death of someone they were close to, and with support from NHS England, Marie Curie, Sue Ryder and Hospice UK, the guide is intended to make the last hours and days of someone’s life less distressing for all concerned, including friends, family members and carers. As well as explaining the physical changes that someone may go through when they are dying and what can be done to make them more comfortable, the guide sets out the kind of care a dying person can expect to receive. It also details the support those close to the person who is dying should be able to rely on and where to turn to for help if there are concerns about the end of life care received.
2013 was the halfway point of the 10-year 2008 End of Life Care Strategy (“the Strategy”). To mark that, the National Council for Palliative Care (NCPC) held a conference “Refreshing the strategy. The next five years for end of life care: what do we need to do?”.This report includes reflections from the conference day, but is not a erbatim report, as it also includes additional recommendations and thoughts about what next in end of life care. It is intended as an initial contribution and will be followed by further publications during 2014-15.
Caring to the end: Help and support for carers when a partner, relative or friend goes into hospital, and may be approaching the end of their life. This guide will help anyone supporting an adult patient – a relative, partner, friend or neighbour – who has been admitted to hospital and who may not have long to live. They may have been looking after the patient for a long time, but also may have become a carer overnight when their family member or friend is suddenly admitted to hospital. This short, user-friendly guide will help carers to access support and understand how they may be able to be involved in decision making and care, if they would like to.
How to involve and support the family and friends of patients who are approaching the end of their lives in hospitalThe death of a family member or friend is a momentous event, and carers, as well as patients, need to be treated with compassion at this critical time. Carers have much to give the dying patient, and much to offer to the professional team. When they are fully included and offered the chance to stay involved, the care provided by acute hospitals to people who are dying can be greatly enhanced, and the experiences of the person who is dying, their family and friends and the hospital staff can all be improved.This booklet will help any member of staff working in a hospital to enhance the end of life care they give, by more compassionately supporting and involving carers. It is quick to read and packed with practical guidance – a must anyone who works in a hospital.
This report sets out the emerging priorities and themes highlighted at a national conference held on 18th April 2013. It was not possible to capture all of the great discussion that took place but this report hopefully provides some useful food for thought for decision-makers, commissioners andservice providers. If you have any comments on the report, please contact us at email@example.com
What about end of life care? is a practical toolkit designed to help the public and professionals understand the new health and care structures and develop the relationships required to secure high quality end of life care. Also available in this series:Introductory bookletAction Sheet 1 - ChampionsAction Sheet 2 - Local HealthWatchAction Sheet 3 - Clinical Commissioning GroupAction Sheet 4 - Health and Wellbeing Boards Action Sheet 5 - Hospices and specialist palliative careAction Sheet 6 - Housing and care providers
If you are giving care or support to somebody with dementia, particularly as it advances and their ability to communicate reduces, you may find that they sometimes behave out of character. This can be displayed in different ways, including being agitated, frustrated, confused, wandering, anxious, pacing, calling out, aggressive or fearful.And if you can find out what the cause is, you might be able to do something about it.
This publication identifies the need to develop a long term vision for palliative care services over the next 20 years. The document reports on NCPC's progress to date and is set in the context of many of the developments occurring in palliative care today.
Palliaitve & End of Life Care for People with Chronic Respiratory Disease. Chronic respiratory diseases (CRD) account for a significant number of UK deaths and are set to become the fourth leading cause of death worldwide by 2030. This publication considers some of the implications for palliative and end of life care services drawing from a wide range of innovative practice examples and recent policy. It includes a representation of the End of Life Care Pathway mapping out some of the priorities for working with people CRD.
Reviewing specialist palliative care inpatient admissions criteria.Specialist palliative care inpatient beds are a crucial part of the palliative and end of life care economy. This discussion document considers the importance of ensuring productive, flexible and timely admission and discharge policies to and from these beds.
Guidance in end of life care for adultsJointly published by NCPC and The Association of Palliative Medicine in anticipation of the Mental Capacity Act (2005) coming into force in 2007. It is a practical aid for all those who administer artificial hydration explaining the terminology rights and ethical framework; it also includes five case studies and various methods of dealing with ANH from notifying decision-makers to administering ANH in methods other than orally.
A guide intended to raise awareness of the end of life care needs of lesbian, gay, bisexual and trans (LGBT) older people by providing information to support health and social care professionals and carers
Needs, Resourcing, Outputs & Outcomes of Palliative and End of Life Care.This builds on NCPC's data analysis and assessment work. It is a preliminary analysis benchmarking of the financial resources available from both the NHS and voluntary sector sources against differential population need. Benchmarking of available resources against the indices of need can contribute to judgements about how well the availability of financial resources matches differential population need. It includes sections on institutional care (i.e. in hospices hospitals and specialist palliative care services in care homes). Headline data is presented at SHA level.
This Briefing sets out how NCPC, working with its partners across the voluntary, statutory and independent sectors, intends to play its part in helping to turn the vision set out in the strategy into reality.
Briefing 17 reports on the initial findings from a survey of doctors which was commissioned by a collaborative of national charities with an interest in end of life care, and brought together by NCPC. The survey asked doctors about decisions they had made about the provision of, withdrawing or withholding of treatment at the end of life. It also contained questions about doctors attitudes to the legalisation of physician-assisted suicide and euthanasia.
Briefing 18 reports the findings of NCPC's survey of SHAs, PCT commissioners and palliative care providers to find out whether commissioners and providers could account for the additional funds allocated for palliative care, and whether they were reaching frontline services.
Improving quality of life at the end of life for people with dementia.The overarching theme of this publication is collaboration. It outlines where barriers can occur and provides practical solutions to facilitate effective partnership working to benefit people with dementia at the end of life. This publication also includes case studies and examples of local projects with key learning points, as well as practical tools to enable professionals in health and social care to build the skills and expertise necessary to develop their own practice.
One of the first reports in the UK to draw much needed attention to the palliative care needs and experiences of minority ethnic older people. The report discusses ethnic disparities in health and clinical outcomes highlights evidence suggesting poorer access to palliative care services for minority ethnic older people and draws attention to good practices and projects in the palliative care field aimed at reducing inequalities in palliative care. NCPC & PRIAE hope this publication will generate greater awareness and discussion of the issues addressed and help palliative care services to develop innovative approaches to addressing the palliative care needs of minority ethnic older people.
This publication is based on NCPC's survey of the specialist palliative care workforce in England to assess issues surrounding non-medical prescribing (NMP) in palliative care. The results from this survey together with the 2006 'Our Health Our Care Our Say' White Paper and the End of Life Care Strategy prompted NCPC to investigate further the issues solutions and impact of NMP in palliative care.This publication has been written to inform non-medical prescribers, those thinking of initiating NMP, service planners, commissioners and policy makers.
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The Dying Matters Coalition is led by the National Council for Palliative Care, the umbrella charity for end of life care in England, Wales and Northern Ireland.